Unexpected news

It’s been cold and rainy the past few days so we didn’t do much this weekend, just stayed nice, toasty and dry at home. But today we were forced to take Natalia out since she had a follow up appointment with her GI doctor. So I bundled her up to face the cold (no hat of course).

She had an upper GI test a few weeks ago and we were given the un-official results then and there that her Fundo is holding up perfectly. We were thrilled and that’s what we were expecting to hear in today's GI apointment, so it was a complete surprise to hear the other news her doctor had for us: Natalia has a hernia in her tiny stomach!! The doc thinks that the hernia developed now that she's spending more time sitting than laying down. That extra weight bearing in her stomach may have caused her stomach muscle to rub with her gtube and caused the hernia. I was in complete shock... I just never new this could happen. . My only comfort is that I don’t believe Natalia’s in any pain, she can communicate pain really well. There really isn’t much we can do now so we’re just going to observe her and see how she does and evaluate if surgery in needed. I'm praying she doesn't, last surgery was tough on her.

She isn’t gaining a lot of weight either; she only gained about 6 oz since Dec. But I now that she’s on her own agenda with that as well… although she still is plotting very well in the CdLS height and weight charts, so I’m not going to loose any sleep about this. She's the pink dot.

Her stats at 17 months: Weight 15lbs; Height 25.5 inches. and 100% CUTEPIE!!

Natalia 101

Here are a few random facts so you get to know my peanut a little better (in no particular order):

1. Natalia was born at 36 weeks, she was 3lbs 4oz and 13.75 inches long
2. She is still in reign since she still has no brothers or sisters
3. When she was born the length from her knee to her ankle was 2 inches
4. She has no speech, but definitely has different sounds (and faces) for different feelings and situations, thus gets her point across clearly.
5. At one point in her life that she was taking 8 medicines, we had a white board to keep track of times and doses delivered.
6. She had her ears pierced when she was 4 months old by a little old nun at the local hospital. She didn’t even flinch.
7. When she was born we were told she would never react to human contact and that she wouldn’t live beyond 1 year. Well, they obviously didn’t know who they were talking about: 16 month and going STRONG!!
8. If she laughs it humanly impossible not to laugh with her.
9. At 16 months she’s teething, her front lower gums are about to explode.
10. She rolled over at 8 months.
11. Natalia loves music; the louder it is the louder SHE is.
12. She wears 6 to 12 month size clothes.
13. Like many CDLS kiddoes, Natalia was born with GERD.
14. When she was 2 month old we found out she had some seizure activity, she used to look ever so briefly to the right as if in a daze. It didn’t seem natural to me so after some tests she was diagnosed with epilepsy and been on Keppra ever since.
15. She L.O.V.E.S textures: leather, silk, fur, chiffon … the softer the better. She can stroke it for hours.
16. Every single time we carry her she throws herself back and looks at the ceiling while being carried, this has been going on for her whole life.
17. She loves to be thrown up in the air by her dad, she laughs her head off. We firmly believe she’s hooked on adrenaline.
18. Our princess had her Fundoplication & GI tube operation when she was 10 months, she was given to much anesthesia and went into Cardiac Arrest. But being the fighter she is was out in 22 days, including extra days in hospital because on pneumonia and C-diff.
19. Natalia has the most beautiful dark, stranger stopping eyelashes.
20. When she was born she was stared upon for being soooooo tiny.
21. When she was 2 months old it was a reason to celebrate if she drank 2 oz (60mls)
22. She has the most beautiful smile, no, really, it’s amazing!
23. As of today she sits unsupported until she’s had it (about 20 minutes), stands with support (although we’re working on her not sticking her bottom out) and taking tiny tiny baby steps while holding on to BOTH hands. This is very VERY exciting!
24. Natalia has crazy curly hair, if you don’t believe me check out some other pictures. This is the reason I make it a point of giving her a hairdo every day (almost every day).
25. Her feet are soooo small that all she wore were sock until last Nov when the weather started getting chilly. As of today she still wears 0-3 month baby shoes.
26. She’s a San Diego Charger fan 100% (ok, so maybe her parents are…)
27. Her wardrobe is just insane. But I plea no contest: baby girl clothes are just too darn cute!!
28. I'm a better person because of her. She's shown me what true unconditional love is.

GI & show

Friday Natalia had an upper GI done as a follow up of her last hospital stay. My main concern was that her Nissen fundoplication was compromised and that her GERD was an issue again. Well, we don’t have the official results from her GI but the doctor who performed the test said her Nissen
was still tight. :) So 2008 is starting on the right track!!

We recently we had a family outing. My husband loves cars, so of course, if there's an international car show in town our family is there.

Juan wanted to be early so he could take his time drooling over, umm I mean admiring every car in the show, but we aren't that organized (yet) so we made it there at around 3pm.

There was a lot of bustle which Natalia seemed to enjoy. Juan was a great guide to the show, he made sure and made sure Natalia had a picture of each of his favorite.
Especialy the new Challenger!!! (Yup, I don't get it eaither)
Now this I could get: a $500,000 Rolls Royce. This car was just AMAZING!!

We had a great time, but what really excites me is that it's MY turn to choose our next family outing.... and no more cars.

A new year

HAPPY NEW YEAR!!!!
We had a great New Year party, Natalia was a party animal

oh! and the food!!! My sis and her husband made a delicious feast: Prime Rib, Ceasar Salad, baby potatoes in butter parsley, cauliflower melt. All I can say is W O W !!!

Sofía, Isabella and Natalia looked adorable posing in their New Year's outfit.

I'm going to miss my brother, sister and gang terribly!!

Sadly things are slowly getting back to normal, my sister & her family have left and now we're left with our normal routine slowly creeping back into space. For us that meant having Natalia's first medical appointment of 2008: she had to have a holter monitor on for 24 hrs after her last ecg came out with some inconsistencies. After her cardiac arrest she had some indication of Long QT syndrome so she's been having ecg's every 6 months but this was the first time we were called in to have the Holter. We went to her Cardio's doctor office and a technician placed the very sticky leads on her, Natalia was a champ, and we were off. No kidding, in & out in 20 minutes!! She had to have her normal activity which now a days is:

I have a video I tried to upload but blogger wasn't cooperating, I'll try to post it later, but YEAH!! she's bearing weight and taking tini tiny steps when you hold her!!! We are extremely exited!!

Back to the holter monitor: then I just took the leads off in 24 hrs and have to yet take it back to Cardio. We'll have the results in 7 days.

I still haven't gotten around to thinking about resolutions... maybey I should, like Natalia, just take it a tini tiny step at a time, that's a good resolution!

In a Nutshell

It’s been quite a bit since I’ve posted and so much has been going on, I’ll try my best to update you.

PART 1

Late November Natalia was doing awesome, she was mastering sitting w/o support, and this was her favorite activity: Mirror play!!!

Then suddenly one day she stopped tolerating her feeds, I slowed her rate down all the way to 40 /hr but she still has ghastly stomach cramps and seemed to be producing A LOT more gas than usual. She would scream in pain and jerk all around, these fits lasted about 40 minutes and I believe that she just got so tired she slept even with the pain.

After one day of this she got a slight fever, I called her Ped and she told me to go to the ER just to be sure. And, as Murphy ’s Law is, Natalia was fine during the ER stay. She was even LAUGHING!!! I couldn’t belive it. We were there for around 5 hrs and they finally decided to discharge us, I was so frustrated because I knew that she wasn’t all well. When the discharge papers arrived I started to dress Naty to go home before I signed them. And then Natalia started having a fit. I mean, it took 2 nurses to hold her down and she’s tiny!!. Thankfully one of the Doctors was there and saw just how terrible her pain was, they admitted her immediately.

Our hospital stay lasted 1 week; she got better very slowly because this time nobody could, by ANY means, get a line in her tiny veins. All her meds were via gtube. She was very weak but finally after 4 days her blood culture came back negative so the game plan changed and they stared weaning her back to Nutren Jr.. that took another 3 days. In the end we were discharged with her feedings at a very slow rate, no solids and a case of c-diff.

We had her 15 month well check 1 day after her discharge: 14.7 pounds and 26 inches. This puts her well above the 50th% in the cdls growths charts.

We also had an appointment with her GI doctor, who was happy with Natalia’s recovery but still ordered an upper GI and a swallow test just to double check that her Fundoplacation is holding up consistently. I’m glad she’s having those studies done again since I know how important gastric & swallow issues are with CDLS. These are going to be in Jan 08.

A week after she was discharged we also had an appointment scheduled with the pulmonologist to try to get the synagis shot for her.. By then Natalia had the sniffles an a slight cough. Everything went great with the pulmonologist, she said her lungs look great but still authorized the synagis. When we asked about the cough she said it was just that: a cough. And just as things usually go: the day after that appointment Natalia started to have this whooping cough that made her cry every single time. This lasted another week, and is finally dying down. She still has a cough, but definitely the worse is over. We can finally both sleep. :)

PART 2

MERRY CHRISTMAS!!!

Both my brother and sister came to visit for the holidays. We seldom see each other since one lives in NY and the other lives in Wisconsin. Their presence made this holiday very special. My brother stayed only for a week, he left just before Christmas. I'm glad he and Gaby (his wife) had the chance to get to know Natalia. We're a pretty close knit family and if there is something I would love is for my brother ans sister to know just how lovable and teriffic my baby girl is.

This is my brother Elias and his wife Gaby with Naty in her PJ's

My sister is still here with her family, she has adorable twin 4 yr olds who are pure dynamite! They are tons of fun. They love to play and cuddle with Natalia, and she enjoys the atention. I think it's time to think about giving Naty a brother or sister, she enjoys other kids company alot!

This was Christmas dinner with my parents, my sister Delia with her husband Jafet.

Chrismas morning was a whirl, imagine two 4year old opening present and jumping all around, Natalia jus took it all in.

Then it was time for her to open her presents, I belive she loved them!!

Hope you all had a teriffic Christmas!!!

We're back!

Well, finally life is begginning to be back to normal. Natalia spent a week in the hospital :( she had a stomach infection. I first noticed her breath started smelling funky, a day after that she started gagging at every meal, and I knew she had some kind of stomach issue because she stopped eating her solids. After a day of gagging and very scary episodes took her to the ER, which means, by my experience, that she is automatically admited. The doctors tend to take everything with Naty with the utmost care because of her medical history: cardiac arrest, pneumonia, c-diff, etc etc.
Juat wanted to touch base with the blog, and I'll soon post some pictures and talk more about this. Darn! i don't even have time to peek at my favorite blogs!
byebye.

ENT & Thanksgiving

Yesterday we had an early ENT appointment to rule out fluid in Natalia's ears. She has another ABR (hearing test) next Dec 3rd after the first time we were sent back and the second one that was canceled because o fluid in her ear. So we are good to go... no more fluid in her ears!!! Now we have to keep her completely sniffle-free until after the ABR.
Natalia was in an excelent mood, "talking" all the way home. When we got home she became vey entertained with her activity block (thanks Clari!). I'm thrilled that she's having fun with it now, she feels like such a big girl when she's sitting alone playing.

We are planning on having a quiet Thanksgiving at home. But that's no excuse not to dress up... Happy Thanksgiving everyone!